Summary: After the premature birth of their son, Rafael Shlomo Boruch, while attending a Shabbaton in Tennessee, Yehuda and Tzipora Frager learn he has Down syndrome. Distressed by both the diagnosis and the insensitivity of the staff, they were also buoyed by brachos from Harav and Rebbetzin Gifter, the support of their family, and the help of Dr. Steven Caplan, their pediatrician. Upon arriving home in Baltimore, they weather more ups and downs due to comments by friends and social workers. They start learning how to deal with their own emotions and decide to focus on practical matters, like getting to the bris.
As I begin to write this third article, it is Rafi’s 34th birthday, b”H, November 17, 2013. Every year on the Shabbos before Rafi’s English birthday, we have a Shabbos lunch/party in his honor at our home. Rafi’s direct care staff and their spouses come as well as his roommate Jeffrey with his direct care staff. The food is always a standard Thanksgiving Day menu, which goes well with our family’s theme of thanking Hashem (G-d) for our eldest son along with our other blessings. Rafi proudly recites in Hebrew the kiddush and gives a dvar Torah on the weekly parsha. He then digs into his traditional gefilte (chopped) fish, roasted squash soup, favorite turkey with homemade stuffing, roasted potatoes, and string beans. The dessert is always pumpkin pie, also his favorite.
Rafi is very close to his direct care staff and his roommate, whom he considers his extended “family-by-choice.” Rafi’s five siblings are quite possessive of him and don’t want to share him with his other “family,” so we usually have a separate brunch on Sunday morning, when his siblings, nieces, and nephews, zaidy, my husband, and I get together and have fun. In addition, Rafi shares his Hebrew birthday, which usually comes before his English birthday, with his niece, my daughter’s third child, a fact we make a big deal out of each year.
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Things were not always as relaxed and cheerful as they are now. When I left off our story in the second article, we were still grappling with the turbulent emotions and practical problems that we faced shortly after our son’s birth. He hadn’t even had a bris, and there were several hurdles to cross before he could have one. Still, as I nursed my son, I had time to think about what the future had in store. I often wondered how one extra chromosome could be such a big deal to so many people.
I remembered my twelfth grade teacher for Chumash, Rebbetzin Kronglas, discussing how nothing Hashem does in this world is insignificant or a coincidence. She also explained that what happens to one person usually affects all of the people around him or her. The intensity of someone’s reaction depends on how close that person is to the person who is affected the most. This perspective was my first lesson in “systems theory,” which is fundamental to my current profession, social work, and my specialty, family therapy. Of course, Rebbetzin Kronglass’s perspective was from the Torah and was not identified as the systems theory, yet this concept greatly shaped my hashkafa (philosophical outlook) about everyone being part of a family, a circle of friends and acquaintances, and an entire community.
It is difficult enough to raise a child to be an eved (servant of) Hashem in our society – let alone a child with a disability. Yehuda and I decided that we would stress the importance, within our family, of raising each of our children, including our special son, as a Torah observant eved Hashem, and that we would continue to model appropriate behavior, as we were doing with our daughter. We also wanted as “normal” an environment as possible for our son and his older sister, and hopefully for our future children, for all of their benefit. We believed, and still do, that our son could become a major contributor to society just the way he is, exactly how Hashem created him.
One of my first thoughts was that Hashem chose Yehuda and I as well as our siblings, parents, other family, and friends. I just did not know or understand why. I certainly did not believe I had it in me to do what was necessary during that time. I knew my mother, a”h, and my father, ybl”c (he should live and be well) were capable of moving mountains, but I did not think I could be focused and consistent enough to do what needed to be done.
My response was to go into what I call my Bais-Yaakov-and-Yavne-Seminary-mode, in which I used to synthesize the information I needed to learn in order to put it into practice. I hung onto every suggestion from our pediatrician, Dr. Caplan, and our social worker/genetic counselor, Sharon Gittleson, and listened to all of the professionals as if I were being graded in school. I read whatever I could find about Down syndrome and took notes. My mother drilled me after each visit about the next step such as how were we going to fix this and what were we going to do about that. Most importantly, were we doing everything possible for our son? I felt as though I were back in school and doing homework every minute. There was no time for anything but setting up appointments, meeting with professionals, learning the Down syndrome baby survival lesson of the day, coming home and doing chazara (reviewing), putting the next steps into place, taking care of my children and our apartment, and preparing for Shabbos.
Yehuda’s parents were just as concerned as my mother that I was giving our baby the right amount of attention and care. They wanted me to concentrate on our baby looking as good as possible no matter what. They believed that Baltimore was not the best place to raise our children, especially now. They wanted our family to move to New York or Los Angeles where they were sure better treatment would be available for a baby with Down syndrome.
All this was mentally and physically exhausting, but being an overachiever – yes, I finally accepted the label – I tried to stay focused on the concrete concerns and suppress the high emotions that tended to surface. And emotions were running high. All of our family members believed that their opinion counted more than ours or anyone else’s, for that matter, except for my father, who was steady and consistent with emotional support as well as accompanying me to all the appointments with our baby and our daughter. My father did not venture an opinion about what was going on. Rather, he was a sounding board for my high emotions and tears of frustration.
My only sister, CV Dinovitz, was living in Israel with her husband at that time, and I finally talked to her on the telephone after we returned to Baltimore. CV was, and still is, as stable as my father was to me, and offered the appropriate amount of emotional support while being direct enough to help me face reality without falling apart. In fact, I believe my sister could have originated the concept of “it is what it is and there is nothing else to discuss,” which helped to focus on the solutions that allowed all involved to function in daily living despite the intense emotions in the air.
CV comforted me by simply being my sister, letting me be me, and accepting our son for who he was. There was no second-guessing our decisions and, most important, no pity or tochacha (looking for what we did wrong to deserve this). CV also told me that she and my sister-in-law Sara Beth Frager (now Kahn) went to as many gedolim as possible to obtain brachos (blessings) for our baby. CV “cracked the door” to my healing from the trauma of the circumstances surrounding our baby’s birth.
Around our second week back in Baltimore, Yehuda and I visited Harav (Rabbi) Shmuel Yaakov Weinberg, zt”l, for guidance and chizuk (strength). Harav Weinberg was Yehuda’s Rebbe (spiritual leader). We had spoken to him quite often in the past, especially when my first pregnancy terminated after five months and the doctors discovered some issues affecting my ability to carry a baby to full term.
Harav Weinberg’s first words to us were, “Mazal tov.” We told Harav Weinberg that our son had Down syndrome, and he said he had already heard. To us, this was a major source of validation. Those people who simply said mazal tov when we told them that our baby was born, without focusing on the diagnosis, helped me heal from all I had gone through. We were very close to the Rav and Rebbetzin – Rebbetzin Weinberg had called to comfort me after I lost my first baby – yet neither Rav nor Rebbetzin Weinberg called us immediately to give their advice. Rather, they both waited for us to come to them when we were ready. I learned from these great people that one just does not go into someone else’s boundaries to “help” unless that person requests help.
Harav Weinberg said that we were going to see nachas (pleasure) from our baby. We told him we were not there so much because of our baby – we knew he was a bracha from Hashem. We did not feel many negative emotions yet. We thought that one of the reasons we did not focus on feeling what we were going through was due to all of the unsolicited advice we were receiving from family members and friends. We did not want to second-guess ourselves, and we wanted to get on an even keel so we could be good parents. We could not understand why people acted as though this were their problem, which they had to fix. We also could not understand why various so called friends (many of whom were merely acquaintances, not in our close circle of friends) contacted us to verify what they heard and to tell us that we had to acknowledge this problem – and then insisted that we discuss it with them.
The first thing Harav Weinberg told us after the mazal tov was that our parents were probably hurting more than we were from the uncertainty of the situation and from losing a “normal” grandchild, their first grandson. Not only were our parents hurting for their children, Yehuda and me, but their hurt was compounded by hurting for their grandson and granddaughter, and worrying about what type of life was this child going to have, what type of life were Yehuda and I going to have, and what type of life was their granddaughter going to have? (This consideration for the parents of those in counseling also has become a fundamental idea for me as a social worker and family therapist.)
I understood what Harav Weinberg said and was able to apply this knowledge intellectually. What I had a difficult time with was learning how to apply this knowledge emotionally, how to not remain hurt about how my in-laws were acting in urging us to move from Baltimore because they did not think this was the best place to raise our son. My support system, which I relied on heavily, was all in Baltimore. Of course, it was easier to apply this knowledge emotionally to my own parents’ advice because they were my parents, a major part of my support system and I trusted them instinctively.
As for well-intentioned friends offering their opinions about how we should cope with our son’s disability, Harav Weinberg said we could tell them we were not discussing it with them or politely listen without responding. Since I was not mature and confident enough to do the first option, I chose the latter. But I learned a lot about not entering someone’s boundaries unless I am invited and, even then, the “visit” should be short and sweet.
The next day, I decided to call Rabbi Steinberg, zt”l, my high school principal and Rebbe; I trusted him with my feelings. When Rabbi Steinberg came to the phone, I told him that I had given birth to a baby boy who had Down syndrome, Rabbi Steinberg immediately said mazal tov and told me that we would have so much nachas from this baby. I also told Rabbi Steinberg that I was not informing people in our community that my son had Down syndrome until after the bris, since we were going to invite as many members of the community as possible and wanted many sincere brachos bestowed on my baby and family. I stated that I did not want anyone’s pity, only expressions of sincere simcha (happiness) for us. The only way I believed I could achieve that goal was not to volunteer any information about our son’s condition, because those who had heard about it through the grapevine were acting peculiar enough as it was. Some were acquaintances who wanted us to publicly acknowledge and face up to our baby’s condition so we would not be “in denial.” And some were singles who had spent almost every Shabbos at our table yet were telling our friends that they felt so uncomfortable about what had happened that they couldn’t even call us.
Rabbi Steinberg reassured me that he understood how I felt, which included words of healing and comfort for me. Now I had two very well-respected rabbis whom I instinctively trusted who spoke the words I needed to hear.
The same day, my close friend’s mother, Mrs. Peshie Poliakoff, a”h, called and comforted me by saying, “Tzipora, I know from my experiences in life that when people ignore someone because they are uncomfortable with what is happening to that person, it is hurtful. I am calling to say mazal tov on the birth of your baby boy. I know he is diagnosed with Down syndrome, but I also know it is a simcha to have a baby and may Hashem give you much nachas from him.” Finally, Hashem sent someone to me giving words of comfort, acknowledging the reality, and offering only brachos instead of pity. For me, this was another step towards healing and getting back to status quo.
That week my confidence started to return. I was becoming a pro at handling specialist appointments, such as for a pediatric urology and for the physical and occupational therapists at Mt. Washington Pediatric Hospital. I visited Sinai Genetic Counseling Services, kept up with housework, spent individual quality time with my daughter, and prepared my first Shabbos while having all this to deal with.
When our son was 19 days old, I was cradling him after nursing, and his head felt cold. I knew a high fever could be ascertained by feeling the head but at that time I did not know a baby could lose body heat, which could jeopardize his health. All I knew was that our baby’s head did not have a normal temperature. Anxiety kicked into full gear, and I called Dr. Caplan. He advised me to immediately bring our son to his office, which was connected to Sinai Primary Care Center in the hospital. Once there, Dr. Caplan explained that our baby was losing body heat and had to be hospitalized.
My parents came and took my daughter to their home, and I went to Sinai. I stayed there the whole day, and Yehuda met me there after work. Dr. Caplan explained that the medical team was running diagnostic tests to find the appropriate diagnosis. He stated that he had not wanted to put our baby back in the hospital when we first came back from Knoxville because all vital signs were good. But now that our baby was losing body heat, Dr. Caplan’s decided to keep our baby in the hospital until he weighed five pounds, which is the pediatric standard for releasing a premature baby.
The first sight of our son in the pediatric ICU was heartbreaking. He was hooked up to an IV from a vein on top of his head because his movements dislodged the IV from his leg. I was permitted to nurse him under an ICU nurse’s supervision. After speaking with the nurses, I decided to pump and leave the milk at the hospital so our son could have it for the after 12 a.m. feedings while I got a little sleep at home. I did this because the nurses explained to me that mother’s milk was the best to build our son’s immune system in addition to supplementing his diet with formula because of his size and weight.
Yehuda, our daughter, and I came home after 10 p.m. that night. Yehuda put our daughter to bed, and I began to prepare for Shabbos, knowing that the next day, Friday, I would be at the hospital until the very last minute, at which point I would have to leave to bench licht (light the Sabbath candles) on time. I also arranged with the nurses to come to the hospital after 2 a.m. for one of the early morning feedings.
Just then, the phone rang, and I reluctantly answered. It was Rebbetzin Chana Etta Schuchatowitz. We knew each other as wives of husbands in the Ner Israel Kollel, and we served together in the Ner Israel Service League. Rebbetzin Schuchatowitz said, “Tzipora we heard your baby was hospitalized and we made Shabbos for you. Don’t worry about anything for Shabbos. I want to bring it over now.”
I was so touched. No judgment, opinions, or pity, just help – plus a magnificent array of Shabbos delicacies much nicer and more than I had strength to prepare. Rebbetzin Schuchatowitz arrived with the food, stayed the appropriate amount of time, and made me feel so much better. She and her crew of like-minded women of good deeds were more shlichim (messengers) from Hashem, who appeared or called at exactly the right time to ease my pain, fear, and uncertainty. They gave me strength by being real and accessible, and by refraining from projecting their fears onto me.
Our baby stayed in the hospital for two weeks and came home in the middle of December. He had reached five pounds, and we began to discuss the medical and halachic criteria for a bris with Dr. Caplan and our family-designated mohel, Rabbi Amram Taub, zt”l, a local shul (synagogue) rabbi, authentic chasidic Rebbe and scholar. Rabbi Taub had been a mohel since after World War II, during which he worked day and night for months in the deportation camps in Europe after losing his entire family including wife and children.
Two issues had to be addressed: The first was our son’s jaundice. The second was the examination by a pediatric urologist to address an issue some male babies diagnosed with Down syndrome have. The appointment with the urologist happened as we were waiting for the jaundice to subside. If the doctor thought my son had this issue, a bris would not be advised for medical reasons. Even though I trusted Dr. Caplan and his respect for my strictly Orthodox Jewish observances, I did not know anything about the urologist referred to us and was not taking any chances this time. My experience was that medical people could sometimes shoot me down with their medical knowledge, using a condescending communication style and, perhaps, displaying their disdain for my observance level. I therefore brought my “arsenal” with me, my rabbinical scholar and university graduate father along with our very senior mohel, Rabbi Taub. Well, I knew they could not shake my father or Rabbi Taub.
The appointment began as I thought it would. The urologist barely looked at our baby and decreed that a bris was not advised for medical reasons, e.g., his muscles were unable to constrict enough. My father and Rabbi Taub asked the appropriate questions, and the urologist was dismissive. As the three of them were discussing the issues, my son was lying on examining table diaper-less. The doctor was acting as though he did not understand Rabbi Taub and my father’s translation. (Rabbi Taub spoke in Yiddish, although he understood English and all that was transpiring.) Nonchalantly, Rabbi Taub placed his hand on our baby’s thigh and proved that our baby could have a bris. As the urologist stared in disbelief, our baby proceeded to relieve himself in the urologist’s face!
Step one accomplished: our son was able to have a bris. However, Rabbi Taub said we needed to wait for the jaundice to decrease to an acceptable level. This was much more difficult than proving our baby could have a bris. The key to decreasing jaundice was hydration. Our baby kept falling asleep most of the time, whether nursing or drinking from a bottle. No matter what Yehuda and I did, we could not keep him up long enough to drink the amount of liquid he needed. At that time, the doctors used to recommend supplementing nursing with boiled water bottles or Pedialyte. We brought our baby to the ER a few times during this period, because we could not keep him awake long enough to finish the recommended amount of water or formula. We were told that Down syndrome was not the reason for his sleepiness; the reason was his prematurity. They told us our baby would “wake up,” stay up for longer periods of time, around his due date, which was Jan 6. That was when we decided with Rabbi Taub and Dr. Caplan to shoot for the bris to take place on Jan 1, 1980.
Soon after we decided on the target date, Yehuda called a rabbi with whom he had learned at one time. This rabbi showed genuine concern for our son and inquired about the bris. However, when Yehuda told him our target date, the rabbi reprimanded Yehuda, saying that a bris had to be done as soon as possible and we could not arrange a convenient time so that Yehuda’s family would to be able to travel to Baltimore and participate. I remember my husband’s hurt feelings that this rabbi would believe that we were not complying with halacha. After all, we were discussing the timing with the mohel and following his directions.
This was a difficult time, because it appeared that not all those who represented Torah were able to restrain themselves from focusing on issues that were irrelevant to our best interests. Then there were the rabbanim, rebbetzins, and various other individuals who instinctively knew what to say or do; they added so much comfort and healing. At this time in my life, I consciously decided to concentrate on the people who represented the Torah who spoke calming words and did positive, healing actions. I did not want to focus on people who “poured salt on my wounds,” which only ripped away at my emunah and bitachon.
This incident also strengthened my resolve to rely upon my own Rav, whose daas Torah I would accept. I had learned from my father that it is very important to be close to a Rav, and since I am an emotional person, whose whole life is about relationships, I knew my Rav had to be someone I could trust with my feelings. I knew there would come a day in raising and educating our son that I would have questions that required daas Torah. My Rav might have to tell me things I didn’t want to hear. It would only be our relationship – my trust in him – that would allow me to accept his guidance.
January 1 finally arrived, and our son was able to have a bris. Like everything else leading up to the bris, though, choosing our baby’s name led to complications. Yehuda and I had agreed that the second child would have a name from his family. I knew Yehuda wanted to name our son for his paternal grandfather, Max (Mordechai) Frager, a”h, who had played a great role in influencing Yehuda to become more observant by sharing his complete emunah in the divinity of the Torah. Yehuda had told me that when he was a child, his grandfather told him, “When I came to America in 1913, we thought working on Shabbos would establish us faster, and after that we could keep Shabbos the way Hashem told us to keep Shabbos. I want you to know that nothing good ever came from working on Shabbos. I never made enough money to stop working on Shabbos. I regret not insisting that keeping Shabbos was a higher priority than working on Shabbos.”
We had discussed that we wanted to name our son Mordechai Eliezer. Eliezer means “Hashem helped me” and was named by his mother, Tzipora (Moshe’s wife). I was very influenced by the story in the Chumash about Tzipora giving Eliezer a bris in the desert when Moshe’s life was endangered for failing to do so. My father came to Yehuda and me when our baby was born and said that he discussed our baby’s birth with Harav Yitzchak Sternhill, zt”l, another local shul rabbi, scholar and chasidic Rebbe from Europe. The Rav suggested that we name our son in memory of two of the last generation’s gedolim (acknowledged great Torah leaders): Harav Shlomo Heiman, zt”l, a rosh yeshiva (dean) from New York’s Torah Vodaas Yeshiva, and Harav Boruch Sorotzkin, zt”l, from Cleveland’s Telshe Yeshiva, who was niftar (deceased) the year before our son’s birth. Both gedolim had the name Rafael added to their names when they became ill, and each lived more than 20 years after Rafael was added. Yehuda really wanted to name our son for his grandfather, and I had been okay with that. I felt differently after I was told that Harav Sternhill suggested the other names.
Yehuda and I were under much emotional and physical stress keeping our schedules and addressing the needs of our children. Needless to say, we had some emotional discussions. Yehuda agreed to the name Rafael Shlomo Boruch because of the ancient tradition that when a mother gives birth, she has a form of ruach hakodesh (divine inspiration) and instinctively knows what and how to name the baby. The name the baby receives, even if the name was changed many times prior to the official naming, is the name Hashem always intended as the true and actual name. I was comforted by the fact that there was so much thought regarding the name and that Rafael Shlomo Boruch means “Hashem will heal the peaceful blessing.” I believed that every time I said Rafael’s name, I was davening (praying) to Hashem for a refuah shelaima (complete recovery/healing).
The bris took place exactly how we had imagined and orchestrated it. Harav Ruderman, zt”l, Rosh Yeshiva of Ner Israel Yeshiva and my father’s beloved Rebbe, was the sandek. My in-laws from Memphis, Yehuda’s brother, Bruce, in college at Columbia, Missouri, and Yehuda’s uncle and aunt from Northern Virginia traveled from out of town to attend. There were many guests from Baltimore, who came and gave the brachos and simcha that I wanted.
Next installment: Real life begins.
© 2013 Tzipora C. Frager
